There’s No Place Like Home (for the 4th time!!)

We are packing once again from Cincinnati Children's Hospital

and heading for home. We have been given our discharge orders and will set our compass north for Loveland in a little while.  Ethan has reached the surgery team's discharge goals of tolerating feeds and presents with no more pain from his surgery, and he will go home with instructions to feed in the j-tube for the time being.  We will slowly transition Ethan back to larger feeds in the g-tube, with the guidance of his wonderful dietitian.  We are also going home with a lighter load of medications, as several of his meds have dropped off during this recent admission.  Progress!  As a very dear friend has remarked, this hospitalization was a "Cha Cha" on Ethan's path.  We will continue to move forward and chart a course for bigger and better things to come (baby steps, of course).

As we gathered for the first Passover Seder on Monday evening, I thought about the meaning of the word "seder."  In Hebrew, the root word means order.  We follow an order to the evening, a predictable flow of the steps.  With steps like blessing the wine, washing the hands, telling the story and the coveted part, the festival meal, we know that every year we will pass through each step of the Seder.  

There is a comfort in this pattern, and we gathered this year with good friends to celebrate this spring holiday, with its promise of redemption and renewal, of strength and perseverance.

With the arrival of Passover, we have arrived at a very emotional time in our journey.  These next couple of months will be full of moments of Ethan reflections from last year.  We look back and say, "Last year we were…for Passover", "Last year, we were cheering on Ethan's baseball team, celebrating his first and second home runs", "Last year we were excited watching Ethan's portrayal of a salesman in his first theatrical performance in 'The Music Man.'"  While these memories are great to have and to reflect upon, they are also a reminder of all that Ethan has not been able to do this year.  Our family is not whole and our "order" has been disrupted.

During the Seder we sing the song "Dayenu," translated as "It would have been enough for us."  The song is about our gratitude to God for all the gifts given to the Jews (our ancestors) as they fled Egypt;  gifts such as being taken out of slavery, splitting the sea and allowing safe passage across on dry land, providing for the needs in the desert for 40 years, giving them Shabbat, giving them the Torah, etc. Had God given only one of the gifts–we sing–it would have been enough.

Back in the fall, I was so hopeful that by Passover I might be able to share all of our "Dayenu" moments with Ethan.  I asked myself over and over, "when will I feel we have reached our Dayenu–the time we would be able to say 'it would have been enough…"?  Maybe next year…

The last words said, or sung, at the Seder are "L'Shanah Haba'ah B'Yerushalayim–Next Year in Jerusalem."  I'll be happy just having our whole family together for Passover next year, be it in Jerusalem or in Loveland.

Happy Passover to those who celebrate,

Alexia and Scott